Alopecia UK's Youth Voice Board gathered together to discuss what things they want their friends, family and the general public to know and understand about what it’s like to live with hair loss. Here are the 7 things they would like you to know about alopecia..

1. Not everyone likes to be called ‘brave’

- We don’t all like being called ‘brave’. I haven’t done anything amazing to be called brave and I am just living my life.

- We can get called brave for showing our true selves, but we’re just not covering up.

- I feel like I am dealing with it like anyone else would. I don’t have much choice.

- Sometimes if family or friends say, “you’re being really brave” that can be nice and can help, but when it’s a stranger it suggests that you’re brave for showing your hair loss because it’s ‘different.’

- ‘Inspirational’ is another one I’m not too sure about. It depends on the context and how the person says it. 

2. Everyone experiences alopecia differently (both physically and mentally).

- There are actually different types of alopecia, including alopecia areata which is patchy hair loss. There is also alopecia universalis which is the loss of all hair on your body and alopecia totalis which means loss of hair on your scalp.

- For some it might grow back, and maybe even fall out again, for others it might never come back.

- Everyone chooses to deal with their alopecia in different ways. For example, some people with alopecia would prefer if someone (for example at school) had questions about why they have no hair, that they direct those questions straight to them, rather than asking their friends or whispering about it behind their backs.

- Some people would rather people didn’t ask them publicly about their hair loss, but rather get to know them and then maybe ask in private.

- Some people like to make jokes about their own hair loss and use humour as a way to cope. Others don’t feel comfortable doing this and wouldn’t want their friends to make jokes either.

- Some people embrace their hair loss and chose to not wear wigs or headwear, some people do. We need to normalise all choices.  

3. It is more than ‘just hair loss’

- It can massively impact on your mental health and self-esteem and confidence. It can feel like you have lost a part of yourself

- Waking up and looking different to how you did before and different to other people can be hard to manage emotionally.

- It can impact other areas of the body not just your head hair. For example losing your eyelashes can cause dust to get into them more easily and irritate them.

- Some people also get bad nails with alopecia

- If you lose your body hair it can make you really cold.

- Some people also have other auto-immune conditions alongside their alopecia.

4. Alopecia is not a type of cancer and it is not contagious

- People can automatically assume it’s cancer, because once they see that you are bald or have patches of hair loss, they think you are going through chemotherapy. They then have sympathy for you but then when you explain it’s alopecia, they no longer have sympathy for you.

- Some of us have been approached in public and asked if we have cancer. It can then be really awkward to say no and have to explain what alopecia is. If there was more awareness about what alopecia is this might not happen as much.

- Some people at school have avoided me because they think they might catch alopecia.

5. We cannot control our hair loss

- I started having alopecia and it stopped falling out a few months later. Recently it started falling out again and then stopped. For me I believe it is triggered by stress and I had a realisation that this might be something that I have to deal with forever. 

- We don’t always know why we have hair loss, but it’s not our fault. I was once told it was because I dyed my hair but I know that isn’t why and that then made me feel like it was my ‘fault’.

- Some people might want to try treatments and some people might not. It’s an individual choice.

- Lots of us have been suggested different things to ‘cure’ our hair loss but nothing is guaranteed to make any difference. Suggestions have included: 

  • Rubbing garlic on your head
  • Washing your hair with rice water
  • Pouring onion juice on your head
  • ‘Hair Loss’ shampoos (that are often really expensive!)
  • Cut all dairy, wheat and gluten out of your diet
  • Put hairspray on the patches
  • Straighten the hair and that will stop it falling out
  • Rub on lavender oil (but it just made the hair greasy!)
  • Use baby shampoo
  • Random hair loss pills bought on the internet
  • If you eat your sandwich crusts it will grow back!
  • Rub orange peel or crushed strawberries on your head

6. Even though we might have different types of alopecia, we all understand how hard hair loss can be.

- Someone with patchy hair will have to deal with seeing their hair falling out whereas someone with no hair might have to deal with more people staring at them. People should know that just because we have different types of alopecia doesn’t mean we deserve different types of sympathy/empathy.

- It is not kind or helpful to reduce people’s experiences and say ‘having total hair loss is worse than patchy hair loss’ as that can lead to feelings of guilt for the person with patchy hair loss and makes them feel like their hair loss needs to be more severe for them to be part of the alopecia community.

- It doesn’t matter whether it’s one patch, two patches, all over, what your gender or your age is, hair loss can be difficult for everyone.

7. Alopecia does not stop us!

- We don’t need special treatment because of our hair loss.

- For people with alopecia areata we might find putting our hair up in a high ponytail more difficult, but alopecia doesn’t stop us from doing all the things we love. I still joined in with things like zipwire with school.

- I was told it would stop me from taking part in activities like dancing, but I told them I wouldn’t let it!

Watch the video that informed this blog post below!

We want to thank our Youth Voice Board for sharing their opinions and experiences. If you want to read more about our Youth Voice Board members you can do so here

You can also follow our Youth Voice Board Instagram page here

This blog post and video form part of our 'Get Talking Week' for Alopecia Awareness Month 2021. 

Make a donation to our Alopecia Awareness Month 2021 Appeal